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Living with NF1
Share your story, find support and information, and discuss symptoms and management of neurofibromatosis type 1 (NF1).
trying for ssi or ssdi
- By ccorri78 · New reply November 21, 2009
- 3 replies
- any have any help that will help get abouved for ssi easyer ...
Claustrophobic in my own skin
- By Anjee_w · New reply November 21, 2009
- 2 replies
- Have you ever felt the weird sensation of being claustrophobic in your own skin? I remember it first happening when I was 8 about the time I was diagnosed with migraines. I use to get them a lot when ...
soft spot on head
- By mrlang1000 · New reply November 21, 2009
- 3 replies
- I have a soft spot on the back of my head and it hurts can this be nf1 ...
Strokes and neurofibromatosis
- By TracyDu · New reply November 21, 2009
- 5 replies
- I am 39 year old female living with NF, Recently I have experienced 3 strokes in less than 2 weeks apart. Does anyone know if these strokes are related to the NF.. Has anyone else with nf experienced ...
Tumor in stomach??????
- By Jaylasmom · New reply November 21, 2009
- 10 replies
- Ive been having some pain in my stomach on the right side for a while now. These past 2 days it feels like theres some type of mass in there. This has bothered me before I was diagnosed and I thought ...
I've just had ED (electro dessication)
- By tresham · New reply November 20, 2009
- 7 replies
- On Friday I had ED done on my trunk and back and a few removed from my face. The doctor at Concord hospital (Sydney) is wary of doing ED on the face so he just zapped a few from my chin. I have had 100s ...
living NF1/NF2
- By HANDSARMSTRONG · Posted November 20, 2009
- 0 replies
- I, Leon Armstrong needs a local doctor, I been living with nf1/nf2 for over 50 years & I want to keep living with out too many more syntoms. PLEASE CAN ANYONE HELP. I LIVE IN LONG BEACH,CA ...
affected for 8 years
- By Katie85 · New reply November 20, 2009
- 1 reply
- i was diagnosed when i was 16 when i had a growth removed when i was 16 from my eye and then i didnt really have any problems until i was 19 when i had a growth removed from my chest. then i really didnt ...
The struggle so far...
- By guilty_spork · New reply November 19, 2009
- 10 replies
- With the crusade atmosphere of late, I thought I'd take a minute to get back to why I'm really here on the site. Finally, after years of pushing and pleading and going from doc to doc, I found a doc who ...
Headaches and pain
- By Quilter2 · New reply November 18, 2009
- 9 replies
- I read daily the discussion and go back and read any new replies. First I must say that this is one of the most compassionate caring group of people I have had the priviledge to know even if it is just ...
A must read
- By DrNiblik · New reply November 18, 2009
- 2 replies
- Hey troops. I was at work today and ran across a book you guys really ought to read. I leafed through it and made me smile. The book is called "The Velveteen Principles-- A Guide to Becoming Real" by ...
Severe headache starting in back of neck
- By GirlA · New reply November 18, 2009
- 16 replies
- Does anyone get headaches starting in the back of neck and head=feels like a lot of pressure, and going into one eye that has an NF on the eyelid? This one is no fun at all. Have no medical coverage ...
Hard times
- By ericr21 · New reply November 18, 2009
- 1 reply
- I ask myself why do i have NF? and how would i take it as a person as i go on in life and learn from it. not many people do not know how hard it can be to be living with nf some times makes it hard to ...
anyone in fl with nf1 or 2 have both
- By flnut38 · Posted November 18, 2009
- 0 replies
- like to see if anyone in fl has the same thing, maybe we can talk about it. thank you ...
just wondering
- By flnut38 · New reply November 18, 2009
- 6 replies
- I know this sounds nasty, does anyone get puss pockets on their bumps, white stuff comes out of mine and the smell is so bad, just wondering , and it feels better when i get ride of the presure.. ty all ...
NF run
- By Liz32 · New reply November 18, 2009
- 1 reply
- Just to let people know there is a NF Run in Philadelphia on Sunday Nov 22 it migth be to late to sign up for it but you could always take a walk around the area. For more infromation just search nf run ...
plexiform neurofibroma
- By Sumatra · New reply November 18, 2009
- 13 replies
- anyone else with a plexi? Mine almost surrounds my torso. I see a lots about bumps, but not so much about plexi's on here, or I'm just missing it. I have one growing into my muscle, causing pain and muscle ...
NF1 like syndrome or Legius syndrome
- By browneyes04047 · New reply November 18, 2009
- 9 replies
- I was diagnosed with NF1 when I was two, I am now 21 and have had absolutley no neurofibromas. I have around 20 CALS and freckling and my father has the same, and like me he has no neurofibromas. I was ...
Where/when do you start?
- By Alpacha-pal · New reply November 18, 2009
- 9 replies
- How do you decide when to apply for disability? Then once you decide where do you start? I have been putting off filing...don't want to admit it is time. However if I wait to long, will I be able to cope ...
Finding a Cure
- By Christine01 · New reply November 18, 2009
- 9 replies
- Would like to know how many patients with NF have found out they have Ostioporosis or Ostiopenia? A side effect to NF is Ostioporosis. I have just been diagnosed with Ostio and just wanted to see how ...
